Fighting for a cure for juvenile diabetes

I recently co-chaired a hearing before the Senate Special Committee on Aging that examined the impact of Type 1 diabetes on individuals of all ages, the progress made because of medical advances and the need for continued federal funding for research.

An impressive group of witnesses, including a teenager from my state of Maine, Emmy-award winning actress Jean Smart, and NBA champion Ray Allen, all told their personal stories about living with Type 1 diabetes or caring for a loved one who has it. The hearing room was packed wall-to-wall with hundreds of delegates from the Juvenile Diabetes Research Foundation’s (JDRF) Children’s Congress, their families, other diabetes advocates and members of the general public.

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Together, they reminded us that diabetes is a lifelong condition that does not discriminate. It impacts people of every age, race and nationality. It is the leading cause of kidney failure, blindness in adults and amputations not related to injury. It is also a major cause of nerve damage, heart disease and stroke.

As the founder and co-chair of the Senate Diabetes Caucus, I have learned a lot about this disease and the heartbreak it causes for so many American families as they await a cure. The burden is particularly heavy for individuals with Type 1 diabetes who face a lifetime of treatment and often physical complications. Usually diagnosed in childhood or adolescence, Type 1 diabetes is a lifelong disease that one can never outgrow.

Prior to his testimony before the committee, Quinn Ferguson, a 14-year-old from Poland Spring, Maine, told me that he felt the day he was diagnosed with diabetes at age 8 was his last full day of freedom.

While often associated with children, the fact is that 85 percent of those living with Type 1 diabetes are adults, and many of them are seniors. An average individual with Type 1 will have to take more than 50,000 insulin shots or infusions over his or her lifetime. The discovery of insulin was a landmark breakthrough; however, it is not a cure for diabetes. People of all ages with Type 1 diabetes face the constant threat of developing life-threatening complications, as well as a reduction in their quality of life.

Diabetes costs the United States an estimated $245 billion a year and accounts for one out of every three Medicare dollars. Because of the serious complications associated with the disease, medical costs for Americans with diabetes are 2.3 times higher than those incurred by individuals without diabetes.

These statistics are overwhelming. But what really motivates me to devote so much energy to this issue is meeting more and more people — like Quinn Ferguson, Ray Allen’s 6-year-old son, Walker, and the other children and families who filled that hearing room — people whose lives have been forever changed by diabetes. They put a human face on the statistics and help us to focus on what Congress can do to better understand and ultimately conquer this terrible disease.

Since I founded the Senate Diabetes Caucus, funding for diabetes research has more than tripled. As a result, we have seen some encouraging breakthroughs, and we are on the threshold of a number of important new discoveries. Advances in technology, like continuous glucose monitors, are helping patients control their blood glucose levels, which is key to preventing diabetes complications.

We are also moving closer and closer to our goal of an artificial pancreas, which would revolutionize diabetes care. Recent advances also include the development of new treatments that can stop or even reverse complications, such as some nerve damage and diabetic eye disease.

Despite these promising developments, more must be done. As a recent Centers for Disease Control study revealed, Type 1 diabetes among young people rose by a troubling 23 percent between 2001 and 2009.

Fortunately, there is strong support in Congress for diabetes research funding, thanks in no small part to the grassroots support provided by JDRF volunteers. Earlier this year, we passed legislation to extend the Special Diabetes Program, which provides $150 million a year over and above the regular appropriation for Type 1 diabetes research — for an additional year through September 2014.

This important program represents more than a third of our federal commitment to diabetes research, and it must be continued. We must maintain our commitment and keep up the fight to find better treatments, a means of prevention, and ultimately — what Quinn and millions of others are seeking — a cure to this devastating disease.

Collins is the senior senator from Maine, serving since 1997. She sits on the Appropriations Committee, the Special Committee on Aging and the Select Committee on Intelligence.